Communicating with young children who have a parent dying of a life-limiting illness: a qualitative systematic review of the experiences and impact on healthcare, social and spiritual care professionals

Background Healthcare professionals play a key role in interacting with children who have a parent with a life-limiting illness. While playing such a role can be challenging, not much is known about how such interactions impact these professionals and affect their ability to render support. Methods Four databases were searched with the intention to conduct a qualitative systematic review. Articles were selected based on pre-determined inclusion and exclusion criteria. Their quality was assessed using the tool "Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields”. Findings were analysed using thematic analysis techniques outlined by Thomas and Harden as well as Sandelowski and Barroso. Review was registered with the Review Registry database. Results Three themes emerged – healthcare professionals’ discomfort; their assumptions and actions; and potentiating workplace factors. The discomfort had several dimensions: fear of making a situation worse, concern of not being able to cope with emotionally charged situations, and internal conflict that arose when their values clashed with family dynamics. Conclusion Healthcare professionals’ sense of discomfort was very pronounced. This discomfort, together with their assumptions, could impact their ability to support children. The organisation played an important role, which was reflected in the work culture, workflow and ability to collaborate with other agencies involved in supporting children. The discomfort was mitigated by having more professional experience, workplace support systems and training on communicating with children. It was apparent that the individual professional did not work alone when supporting children but alongside others within an organisation. As such, issues raised in this review will benefit from multi-faceted solutions. Supplementary Information The online version contains supplementary material available at 10.1186/s12904-022-01007-1.


nurses
Focus groups. Thematic analysis Emotionally challenging (e.g. identify with parent) so avoid interacting with children; lack of time; child seen as a private domain under purview of parent hence may not want to seem interfering and also expect parent to communicate with child about diagnosis / prognosis; importance of peer support with opportunities to reflect; need for training on communicating with children of different ages.
Children need to be identified at point of referral; multiple barriers to supporting children (lack of time or child-friendly space, parents blocking interaction between child and Professional, uncertainty on which Professional should support child); impact on Professional (communicating with children causes anxiety, reminded of own losses of loved ones, emotional burden, availability of resources and training and need for personal support for Professional). Structural barriers (e.g., lack of space in the medical recording system, professional code, time pressure and lack of training); emotional barriers (e.g. the painful nature of the situation and the perceived need of keeping professional distance); the latter tend to grow when the former are not addressed. Parents are gatekeepers to child's involvement with Professional. The latter are subject to the workplace infrastructure and systems which prioritised other tasks.
Limited contact with children (due to workplace culture, systems and infrastructure); parents determined contact between professional and child.

Kennedy, 2008 [33]
UK; A community palliative care service 6 health professionals (designations not mentioned) and 6 family support workers.
Qualitative pre-and postintervention evaluation design. Thematic analysis.
Specialised support services for children need to be accessible, able to take on new clients and be sustainable. Work closely with children before, during and after the parent's death. General Practitioners may not be able to offer such services with the same degree of time and expertise.
Lack of experience and knowledge on children's needs makes it difficult to support them.
Need for inter-team collaboration to leverage on expertise; the importance of child-centric work to support children.

O'Neill, 2020 [28]
Ireland; 2 cancer support centres 5 facilitators who had a professional health and social care background (designations not mentioned) Interviews. Thematic analysis.
Parents are afraid to talk to their children about cancer, and value professional support. Professionals need to know how to deal with children's needs, which vary due to age and development stage.
Lack of knowledge/opportunity/experience with children; impact on own suffering; unsure how much to intervene with family; family shielding the child from the reality of death; estrangement from family once they leave the hospital.

Turner, 2007 [45]
Australia; 3 large metropolitan cancer services 24 oncology nurses Focus groups and individual interviews. Thematic analysis.
Emotionally challenging; lack of education, supervision, and support; challenges working with individual families; fear of making things worse; workplace culture, infrastructure and systems not prioritising supporting children.